January 12, 2010
Hi Shane,
We discussed your proposal at our monthly Board conference call today.
Here are the issues:
There are about 2,500 CFS peer review articles published since the mid-1980s. Classifications on the criteria you suggested (e.g., infectious onset, gradual vs. sudden onset) are reported in some papers but not in others. And the CFS definitions used vary from Holmes to Fukuda to Oxford to Reeves, etc. Review papers do attempt to group studies by various criteria (e.g., age at onset, symptom severity, etc.), but rarely do they identify commonalities that advance our understanding of subgroups, causation, outcomes, etc.
Bottom line: It is most unlikely that an over-arching classification of CFS studies will yield new information because(1) reporting is not consistent on any particular criterion; and (2) the conclusions of well-written review articles over the past 25 years have already identified to some extent what we do know about CFS.
Putting all such doubts aside, there is the question of who will undertake such an effort? This would involve a lot of volunteer time that qualified individuals do not have. These are usually full-time researchers who are in the business of getting grants for their projects. If they wish to write a review, they structure it according to their own views of what's important.
Now the good news: It was agreed that setting up study criteria for the type of data that should be collected in a standardized way in CFS studies would be a good idea and not an impossibly time consuming task. For instance, there is an effort underway to provide standard assessments for the Canadian criteria--a worthwhile effort as these criteria may better capture CFS than other definitions. This is something that will probably be addressed at our September, 2011 IACFS/ME international conference in Ottawa.
Thank you for your input.
Fred
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org